'Portraits of Perseverance' is an on-going multimedia community project that follows the lives of Malaysian women who persevere in the face of chronic illnesses, disabilities and transgender discrimination. It consists of blogs, video journals and TV documentaries. The first project (2011 to 2012) tells the stories of Lucy, Nisha, Pong and Sulastri. The second project in 2013 brings you Pong’s rehabilitation journey.

Friday, 19 August 2011

Embracing Life with All I Am

Me with my curry laksa for eH team's lunch
because Lucy was in the office

Over the last eight years, I have dealt with Lucy

as a Lupus patient and as one of the most reliable
ecobasket volunteers eH has ever had.
After Justina Low, another Lupus patient who was
also very committed to the ecobasket project
passed awasy in January, we are left with Lucy to
help us with the backend admin of the ecobasket project.
Since Lucy also helps the SLE Association,
she doesn't have enough time! She can only come
on a Tuesday to eH office and we make this special day,
the office lunch day.

Although so, we have never sat down to talk about her life beyond the eH office.

For several weeks now, training Lucy to speak infront
of the camcorder for this project has been quite interesting
as it is my first time training someone I thought I know well to overcome her shyness. First, we tested out some questions and answers without the camcorder and she was fine -- she spoke eloquently without pauses and with natural facial expressions. As soon as I clicked the 'on' button, her speech froze, and she stared at me as if she was in another world.

Luckily by now, the sixth session, Lucy has begun to lighten up. She giggles when I ask questions. Sometimes, she looks at me blankly and then later bursts out laughing. When her daughter arrives at the eH office to pick her up to go back to Kajang, she laughs even more. Never have I seen her so light-hearted before.

Although this year started with a few deaths--- first it was her best SLE friend, Justina Low, then it was her mother-in-law in February, then it was her mother in March, and then it was her aunt in April. Four people she loved dearly passed away, one month at a time, consecutively.

Year of the Tiger is supposed to be harsh
for most of us.
Tragedies, deaths, and unsavory incidences
may happen to us
if our blessings are not enough or weak!

"It is a real Tiger year for me," she concluded.
"But I got to go on."

It has taken her several months to overcome
her grief and to see that the four women she
had been taking care of had gone to another happy world, and that they were not suffering from the
illnesses anymore. They are now happy and free
especially Justina who had bi-polar and SLE,
and Lucy's mother who had been bedridden.

During those horrible months, Lucy continued to
help out as much as she could at the SLE office
and counsel new Lupus patients in hospital. She
took public transportation, two hours from Kajang
to KL/PJ or to Melaka or Seremban hospitals,
and took another two hours to go home.
Such dedication to help others is hard to find in this materialistic world.

"Systemic Lupus Erythematosus (SLE), or lupus for short, is a life-long, life-threatening disease that occurs when the body’s immune system turns against its own healthy tissues for reasons that are still unknown. More than 5 million people worldwide, the majority being female, battle lupus daily. In Malaysia it is estimated that 43 Malaysians in every 1000 people have SLE." (Source: SLE Association)

Now that she has more free time because she doesn't need to take care of her mother or rush to Justina to rescue her from depression, she has a bit of time to 'relax'. She now makes sure she doesn't 'work' on Thursday -- a day she spends cleaning her house, reading newspaper or doing things she enjoys especially cooking for her children.

"When you cook in the kitchen, you are 'working', it is not relaxing for you!" I reminded her.

"I can't sit at home doing nothing! I am relaxing when I have time to cook good foods for my children," said the mother whose unconditional love for her children never faltered even during her hospitalization days when the Lupus condition was bad.

Her children are doing well. The eldest son is working, the second son is finishing his university and the youngest is now in UTAR. They are all good children and are filial to Lucy and her husband.

Throughout all these years in her battle with SLE and having to take care of a growing family, one thing came very clear to her -- she is blessed with family love. Her husband and children have been very dear to her. Her extended family has become even closer in the last few years when her mother was bed ridden.

I met her big family during her mother's wake in Kajang This is the family that comes together to share out responsibility in a harmonuous manner when there is a crisis. There were her sisters, brothers, their spouses, cousins, nieces and nephews. All were taking different roles to manage the wake and the funeral next day. Although it was warm inside the house with one stand fan blowing the hot tropical afternoon air over the small living room where the coffin laid, the zinc roof family house in a low-cost area in Kajang exuded coolness in the form of harmony.

I also saw where Lucy spent her childhood-- she played in the compound under the sun, chasing the neighborhood children in games before she discovered that she had SLE; she learnt her fluent spoken English from speaking with other children; and she shared one salted egg and some white rice in the kitchen with her six siblings when there wasn't any other foods. She has many fond memories about her parents and her siblings who are all with children of their own now. The one big family still celebrate festivals and birthdays together.

Lucy, with all the volunteer work she does for SLE and ecobasket, still finds time to help her extended family members. Her Lupus condition has not deterred her from going all out for her extended family even during the hardest time of her life. If there is no car to pick her up, she will walk with an umbrella, wearing a long sleeve shirt ( to protect herself from the sun for her Lupus) to her siblings' houses to help in whatever she can. She is reliable, honest and active, not one to shy away from chores or helping others. This is the Lucy every one knows, even among the Lupus patients.

Lucy and her darling daughter

And so God rewards her withblessed children. ﻿

Her daughter has just passed her driving test,
she is now driving mommy to eH or the SLE's
office if her university class time coincides with mommy's work time, so mommy doesn't have
to spend about four hours commuting daily.

Our camcorder lessons have been in the late afternoon of Tuesdays in the office after Lucy
has finished her ecobasket tasks. By five pm,
her daughter comes in, Lucy's eye lights up.They giggle at my comments about Lucy.Her daughter thinks her mommy is funny, and the mommy thinks the daughter is funny as well. Clearly, mommy and daughter know
what each other is thinking without saying anything verbally.

I didn't realize how much Lucy loves her darling daughter untill we were having a sumptous buffet for my birthday, courtesy of the Crown Plaza Hotel in KL. Lucy stood in line to take food for her daughter from the buffet! This is a typical loving gesture Asian mothers show to their children. My daughter threw me a side glance and commented, "Wow, that is a very big mommy love that Lucy shows for her daughter. I wonder when I am getting food serve to me this way? Huh?"

Lucy did her calm Lucy smile from across the table. Her daughter looked at her from the side, she broke into an adoring smile for her mother.

Lucy, you are blessed because you have been giving yourself to others, every minute of your life!